Advocacy Update: Lessons from the Life and Death of Jessica Jacobs

Coordination and accountability are key in putting patients first, health care advocates reiterate

The life and death of 29-year-old Jessica Jacobs have shed new light on how the health care system treats patients -- perhaps adding an exclamation point to the need for more patient-centered care.

Jacobs, a director at Aetna's Innovation Labs and an advocate for herself and other patients, died August 15 from two rare conditions -- postural orthostatic tachycardia syndrome, an autonomic disorder, and Ehlers-Danlos syndrome. It was her experiences with the health care system, however, that caught the eye of those working to improve patient care.

"ACP must take a leadership role in starting the conversation about what needs to be done to advocate for system changes to ensure that other patients don't find themselves in Jessica's shoes, suffering both from a serious illness and a health care system that too often puts the needs of everyone else above that of patients," said Bob Doherty, senior vice president for governmental affairs and public policy for the American College of Physicians. "It especially challenges those of us, including ACP, that advocate for patient-centered care to make sure that the reality lives up to the promise."

Jacobs documented her experiences with the health care system throughout her illnesses, and the picture she painted was not a pretty one.

As she wrote in one blog entry, "This last year I had 56 outpatient doctor visits, 20 emergency room visits and spent 54 days inpatient. But how many of these visits were useful?" Her answer: "Not many." She also posted correspondence with her doctors on her blog, showing she wasn't getting the answers, treatment or assistance she needed from anyone.

Dr. Margaret Cary, a friend of Jacobs and a physician leadership coach in Washington, D.C., said that it wasn't so much a question of where the disconnect was among the various specialists, hospitalists and care providers as much as why there wasn't any connect at all.

Jacobs did not have a point person, and it seemed that no one was accountable when it came to her care, Cary said. "We can't say she really fell through the cracks as she was really rolled across the floor," she said. "It was more like dodgeball. If you can't help your patient, find someone who can."

At one point, Cary said, Jacobs was discharged from the hospital when her blood counts were in the single digits.

However, "blaming the system isn't enough," Cary said. "Doctors don't know how to work together as a team. There needs to be somebody in change of care -- one person who could have related to Jacobs and who valued her support systems. The doctor should talk to the patient's support system within the bounds of HIPAA and say, 'Here is what we need.'"

Cary said she had a HIPAA permission document signed by Jacobs, but still could not get anyone to talk to her about Jacobs' condition and discharge plans. "It was frustrating for me as a physician," she said.

The Bigger Picture

Sadly, there are many Jesses out there, said Dr. Yul Ejnes, chair-emeritus of the American College of Physicians Board of Regents and a clinical associate professor of medicine at the Alpert Medical School of Brown University in Providence, R.I.

"They don't have to be patients with rare, unusual diseases, either," Ejnes said. "These are the individuals who have several conditions who take many, many different medications that we all see everyday."

The patient-centered medical home, a concept supported by ACP, might have made a difference in Jacobs' care. In this model, care is managed by a team led by a personal physician who provides coordinated care and follow-through so that everyone is on the same page and has access to all relevant information on the patient.

Referring to care-oriented problems overall, "the patient-centered medical home has made a dent in some of this," Ejnes said. "A well-funded, fully resourced medical home involves a doctor who is on top of all specialist appointments and able to easily review test results, make calls and run interference when the patient is in in the hospital."

However, he noted that successful implementation of the patient-centered medical home model is dependent on resources. Also, "everybody must be aligned -- including health plans -- to support this model," he said.

What happened to Jessica Jacobs illustrates the need for across-the-board accountability, Doherty said in his ACP Advocacy Blog on Jacobs' encounters with the health care system, noting "the chasm between the principles we articulate and Jess's experience."

"Hospital administrators need to acknowledge and address how their institutions are failing patients like Jess," Doherty wrote. "And physicians, nurses, pharmacists and other health care professionals must acknowledge and address the fact that Jess -- like so many other patients, including those with more common diseases -- have been failed by a system that doesn't put patients first."

"The medical profession has an obligation to do everything it can not to surrender their patients to a system that doesn't seem to care about them, and to advocate for reforms to truly put patients at the center of the health care system," Doherty wrote.

"Most importantly," he said, "we need to listen to patients, including those like Jess who now speak to us from the grave."

More Information

The details of Jacobs' health care experiences and what this means for internists and other health care professionals is the focus of Doherty's Aug. 17 ACP Advocacy Blog: "Patient-centered care? Not for this patient ... and now for how many more?" as well as his column on the "Health Cents" blog on

Jessica Jacobs' thoughts on her care are available on her blog.

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